Thursday, March 13, 2008

It's A Stretch

Yesterday I went to the orientation session for the Fibromyalgia study that I'm participating in. I was a little disappointed that we didn't do anything but fill out baseline forms and listen to descriptions of what we were going to do, but well, I assume they do all these things for a reason.

I'll be going to Tai Chi classes twice a week, on Monday and Wednesday, and be expected to practice at home for 20 minutes per day. It's very doable, and I'm looking forward to actually learning the moves.

It was interesting meeting other people with fibromyalgia; I'd never met anyone else who had it before. Some people were a lot worse off than I am--one walked with a cane, and another had to bring her own special pen to fill out the forms because her hands couldn't hold a regular pen. I was definitely the youngest in the group, and the only one who didn't seem to get into the conversations about symptoms. I always feel like I need to stay on top of my pain, and not wallow in it. It was strange to look at the questions that asked things like "Does your pain ever keep you from performing your work?" and mark no. The full answer is really: "It could keep me from doing things, but I refuse to let it."

The other thing that was interesting about meeting other sufferers was the constant echo of "no one believes there's anything wrong with me." It's true, that except perhaps for the person with the cane, none of the people I saw looked like they were in pain, but I know from experience that they probably were. Fibromyalgia is nearly invisible to the outside observer. I suppose that's why I'm optimistic about the Tai Chi--it seems to be "invisible" in its effects, much like the disease itself. We'll see what happens.

2 responses:

Vanessa said...

I don't remember how we got on the subject, but at a friend's going away party the friend that was leaving happened to mention that his friend was potentially diagnosed with fibromyalgia and said "it's one of those things doctors tell you you have when they don't know what's actually wrong with you." This seems to echo your "no one believes there's anything wrong with me." . . . none of the people I saw looked like they were in pain, but I know from experience that they probably were. Fibromyalgia is nearly invisible to the outside observer. Having worked with a girl last summer who suffered from fibromyalgia, and having read some of what you've written about it, I knew it wasn't a "fake disease" and told him so. We've had severe disagreements before, and as it was his going away party I didn't want to push it too much. I was so frustrated at what he was saying though!

Reg Golb said...

If you haven't already done so (and aren't afraid to try something outside our medical system) look into the Blood Type Diet.
Hope you find some relief


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